Financial Burdens in Rare Disease
In 2019, 20% of all adults in the United States have reported that they had large medical bills that were unexpected. 18% currently had medical debt. One can only imagine that these numbers have grown exponentially during the COVID-19 pandemic.
The numbers are even worse for rare disease patients.
Financial burdens exist not just for patients, but for their caregivers and family members. It can lead to a loss of ability to work, the need for flexible employment, loss of productivity, and lost wages. It’s estimated that 53% of all patients and their families have to use their savings to cover their costs. 55% of individuals report having to pay out of pocket for expenses not covered by their insurance.
Lack of funds can also lead to a lack of clinical trial participation. This, unfortunately leads to a lack of research, and a lack of therapeutic progress.
Clinical Trial Participation
In 2015 the National Stem Cell Foundation created a Patient Advocacy Fund within the Duke Pediatric Transplant and Cellular Therapy Program. The program’s aim is to provide financial resources to children with rare conditions who want to participate in a clinical trial. It covers copays and insurance deductibles when the costs are too high for the family to cover themselves.
This allows for trials to more effectively enroll patients, leading to accelerated research. Further, it helps supports patients in their time of need.
Shockingly, this program only spends on average $3,000 per participant. A mere 3k is the difference between many families receiving the care they need.
What Businesses Can Do
There are ways for businesses to support the needs of their employees. It often doesn’t take much on behalf of employers, and it can be life changing for patients and their families. Further, it can benefit corporations by reducing employee stress, and improving company performance.
A simple thing such as supporting a GoFundMe can be life changing.
Often, the cost to employers is minuscule compared to the impact it can have on families.
Further, the impact increased clinical trial participation can have on the acceleration of research as a whole is an impact unmeasurable.
You can read more about this issue here.